Adding a Drop of Autism into Your Brain Soup

My son, Julian, was diagnosed with autism when he was three years old. I wasn’t shocked that he received the diagnosis. Julian is completely nonverbal, walks on his toes, and doesn’t have the best eye contact.

At first, it felt odd telling complete strangers about Julian’s condition. I’ve always known that spreading awareness was important. But it felt different now that it was my baby.

I didn’t want to wear a shirt with his diagnosis on it. I didn’t want people to judge him before they even got to know him.

But as time has passed, and new situations have arisen, that feeling has changed. Here’s why:

1. Julian doesn’t “look autistic.”

I’ve heard that comment several times during the past few months. I’m guessing that just means he doesn’t look like he has a disability. Julian looks like a typically developing 4 year old. He walks, runs, laughs, and plays.

We live a couple blocks from the beach and Julian loves crawling in the surf with his twin brother, Dominic. Every so often, another child visiting the beach will approach Julian to play. I don’t get involved. I simply watch to see how it all plays out.

Most of the time, he will simply ignore the other child. This makes Julian appear rude and inevitably hurts the child’s feelings. Occasionally, he’ll engage to play.

But there’s a couple barriers to overcome… 1. He doesn’t talk. 2. He doesn’t understand what the other kid is saying. This also makes Julian appear rude. I’m not sure if you’re aware, but kids don’t like it when other kids are rude to them. They always run and tell mom.

That’s my cue!

The standard protocol for a mom in this situation is to tell her kid to play nicely, or something to that effect. That’s obviously not going to work Julian’s case. Instead, I go straight to the other mom. I let her know his condition.

I’ve found that it eases the tension and promotes a more accepting environment. It even creates a dialogue that wouldn’t have otherwise been started.

2. I used to be “that mom.”

Until a couple years ago, if I saw an older child “being bad” or “throwing a tantrum,” autism probably wouldn’t have crossed my mind. I honestly would’ve thought the child needed to be disciplined.

None of my friends had children with autism. I simply wasn’t as aware or as informed as I am now.

So I tell others about Julian’s diagnosis – not for sympathy or attention. I simply want to add a drop of autism into their brain soup.

So the next time they see an older kid “having a tantrum,” they might have a different perspective, or view of the situation. Then they might offer a kind smile, instead of a disapproving glare.

3. Julian is getting older.

Julian has always ‘visited’ other groups of beach-goers. We live at a quiet neighborhood beach, mostly frequented by locals. He would walk among them while they talked. He might even sit in their chair or play with a toy.

Nobody ever minded. They would always dote over how adorable he was. That won’t be the case for long.

As Julian continues to grow at a normal rate, his speech and cognitive development is progressing at the pace of an inch worm. Behaviors that used to be tolerated or seen as “cute,” will quickly become viewed as inappropriate and annoying.

Most people aren’t mean. We simply have societal norms, an unwritten rule book, that everyone is expected to follow.

When people like Julian deviate from those norms, they are viewed as rude, intrusive, or unmannerly… Unless people know they have a disability. And how would they know that if I don’t tell them?

Now that I’ve started opening up to complete strangers about Julian’s autism diagnosis, I’ve found that many people are interested in learning more about the condition.

Some even have friends or family members on the spectrum. There have even been a few people who have given me advice or tips because, they themselves, have been in my shoes.

What are your thoughts on spreading awareness? Do you talk about your child’s disability to strangers? Have you found it helpful?

Like this:

Related

22 Replies to “Adding a Drop of Autism into Your Brain Soup”

Hi! I love this post because I’m right there with you! We chose to be open about our son’s diagnosis because we wanted to educate and reach others in the same boat as us. Glad I found your blog! I wrote about our son’s diagnosis on my blog, http://www.bestkindoflifeblog.com 🙂

My daughter has high-functioning autism. So her advanced verbal skills make it even more deceptive. She is a teenager, so there was a period of time when I felt uncomfortable sharing about it without her permission. She was okay with it, though. I wanted to share for the same reasons you listed. I didn’t want people assuming she was a rude teenager because she might not respond to their greeting or look them in the eye. It sounds like you’re doing an awesome job with your son. I wish you both the best!

My son (age 33) was diagnosed with mild atypical autism a few years ago based on the new DSM-V criteria. What I wouldn’t have given to have that diagnosis when he was 4…. or 10…. or 16!!
Helping other people understand is critical. The more you learn to talk about it when they’re young, the better you’ll be at advocating for your child when they’re older.
And I can tell you from experience that the need for advocacy never ends!

One of the things I used to do when I was at the grocery store or someplace that seemed to be a high stress area, and one of the kids started acting out…. I’d talk quietly to him… but, loud enough that people nearby could hear. Describing what he was probably feeling and how I was going to be right there with him and help him get through the stress until we got to the car.
Sometimes the very best we can do for our kids can be an educational tool for others if we just turn up the volume a bit. 🙂

Thanks for sharing yes I always share my son’s diagnosis. And I tell young children that he learns differently then you do but he still loves same things you do such as swinging, or the pool or movies Etc… Some kids have even offered to help him speak. Another child 4 years old offered to help him and “saved his life”as he told my son to stop when my son was running down the street and stood in front of him. (No danger we were in a cul-de-sac.) Very cute to see empathy at a young age

As my daughter has gotten older, she just hit the 4yo mark and got her official diagnosis, I feel obligated to tell people especially when I hear a sigh or feel eyes on me when she is doing something that isn’t a norm for our society. I share posts on my Instagram feed to raise awareness because most people don’t know. I never did. I think it’s up to us. We are still battling long existing stereotypes and stigmas associated with autism. My own mother won’t even recognize a neurological diagnosis of her granddaughter. I tell people and share what I know so that one day no grandparent will reject part of their grandchild. My nephew loves his cousin and educates people at parks and playgrounds. He’s become the helicopter mom for me running autism interference when things take a turn. When we educate it’s amazing what happens. A six year old who understands autism is more compassionate than a 58 yo with limited knowledge of it. So yes, tell anyone and everyone and let them see that autism is not one-size-fits all. It’s your son, my daughter and thousands of other kids who don’t fit the mold. Long story short, great post!

I just wanted to say that I totally relate to what you said. My daughter was also recently diagnosed. She’ll be 4 in February and is high functioning and is verbal. So my mom, her grandmother also rejects the diagnosis and makes me feel guilty for having her “labeled”! It’s so hard sometimes and because she is so high functioning, I feel like people don’t believe me or something. Of course they don’t see what I see at home but I hate that I feel the need to even defend the diagnosis. My mom actually said to me once “oh you just need to stop focusing on her bad traits and focus more on what she can do well, stop labeling her” as if searching for something to be abnormal! It infuriates me! So thank you for sharing and everyone’s responses as well as the article itself gives me much inspiration!

I’m studying Psychology, so I’ve learned about Autism among other disorders, but I’ve never actually met anyone who has it, to truly know what it’s like. From what I’ve read here, it’s giving me a clearer picture, and I think it’s great that you’re able to spread awareness despite any qualms you may have originally have had. It’s nice to hear how people become more understanding once they are aware, it’s clearly very important to spread the awareness

I loved your post. My grandson and my nephew both have autism. One of my daughter’s step-family accused her of causing her son’s autism. We really need to reach out and educate everyone around us. Thank you for your story and the great comments.